1. < Osteoporosis & Bone Health

I started Forteo 3 mths ago and have bad side affects

Posted by naomikrst @naomikrst, Oct 31, 2023

I started Forteo 3 mths ago and am dealing with bad side affects. I already suffer from chronic ISBD but now have severe diarrhea and have lost 14lbs and every day from the time I wake up until about 2:30 in the afternoon I'm running to the bathroom, it's increased my migraines, I have hair loss, i was taking BP meds before due to high blood pressure but had to stop because now my BP is incredibly low heart rate is high and my BP crashes at least every 2 weeks to 57/37. I already have angina but now because my BP is low I can't take nitro when I'm suffering with chest pains. When I give myself shots I have no problems on the left side but my right side bruises and bleeds every time... These are just some of what I have been dealing with since starting Forteo. Has anyone else experienced anything like this with these shots???? I can't imagine living like this for 2 years!!!

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naomikrst | @naomikrst | Nov 3, 2023
In reply to @gently "Thyroid and Parathyroid are different glands with distinctly separate functions. The four parathyroid glands are embeded..." + (show)
@gently

Thyroid and Parathyroid are different glands with distinctly separate functions. The four parathyroid glands are embeded on the posterior surface of the thyroid gland, hence the name.
I can't find words for the experience with the metabolic bone specialist. But you've made good decisions about quitting the drug and the doctor.
I'm curious about how fast the adverse symptoms will subside.

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Its been 3 days since stopping and still dealing with all the same issues..... I can't wait for them to stop. My BP did come up 1 time yesterday but then dropped again. Will monitor it again today. Still rushing to the bathroom though... Ugh

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lkel | @lkel | Nov 3, 2023
In reply to @greenlilac "I took forteo long ago when it first came out. I lost all my hair --including..." + (show)
@greenlilac

I took forteo long ago when it first came out. I lost all my hair --including on my body and face. I still have thin hair on head but they tried to tell me this was not a side effect of forteo - which now hairloss is listed as a side effect. You are truly having side effects from the drug. If you stop it -- I didnt- you will lose any gains but at what cost? Regardless, after the 1 year of forteo the loss starts again -- I lost any gains by now and never got the hair back. Its difficult to decide what to do and I feel your distress.

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Fosamax (alendronate) holds the gains from Forteo. Per my Endo (I recently finished 2 years of Forteo) and was prescribed Fosamax.

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2 replies
windyshores | @windyshores | Nov 3, 2023

@naomikrst in my experience side effects from Forteo and Tymlos go away quickly. Are you sure your symptoms are related?

I also have low blood pressure. I drink and eat salty things before doing my Tymlos shot. I got up to 84 systolic. Oddly, moving around is better for me after the shot, so perhaps being more active raises the bp.

I have afib and can't take meds for that due to low bp and end up in the ICU. I still managed to do 2 years Tymlos due to the adjustable dose and hope you will consider it.

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1 reply
njhornung | @normahorn | Nov 3, 2023

I would suggest calling Forteo Connect for support
Need help? Call FORTEO Connect™ at 1-866-4-FORTEO (1-866-436-7836).

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naomikrst | @naomikrst | Nov 4, 2023

Thank you for the information!

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naomikrst | @naomikrst | Nov 4, 2023
In reply to @windyshores "@naomikrst in my experience side effects from Forteo and Tymlos go away quickly. Are you sure..." + (show)
@windyshores

@naomikrst in my experience side effects from Forteo and Tymlos go away quickly. Are you sure your symptoms are related?

I also have low blood pressure. I drink and eat salty things before doing my Tymlos shot. I got up to 84 systolic. Oddly, moving around is better for me after the shot, so perhaps being more active raises the bp.

I have afib and can't take meds for that due to low bp and end up in the ICU. I still managed to do 2 years Tymlos due to the adjustable dose and hope you will consider it.

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Because of the health issues I already deal with on a day to day I'm very diligent in paying attention to how my body reacts to new medication. I wasn't having the issues with my BP before Forteo as a matter of fact my cardiologist and I had finally gotten everything under control. For the first time in 2 years I wasn't throwing pvc's, wasn't dealing with chest pain, and was taking BP meds to regulate my BP which was working. As far as the other issues, dropping 14lbs since starting is not made up, I have. None of what I described was made up. I do suffer from previous issues yes, but Forteo exasperated them to an unbelievable degree causing me to be where I am now. Again, I pay close attention to what is going on with my body due to the fact that I do suffer every day with ongoing issues so I may pay more attention than someone else....

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2 replies
naomikrst | @naomikrst | Nov 4, 2023
In reply to @naomikrst "Because of the health issues I already deal with on a day to day I'm very..." + (show)
@naomikrst

Because of the health issues I already deal with on a day to day I'm very diligent in paying attention to how my body reacts to new medication. I wasn't having the issues with my BP before Forteo as a matter of fact my cardiologist and I had finally gotten everything under control. For the first time in 2 years I wasn't throwing pvc's, wasn't dealing with chest pain, and was taking BP meds to regulate my BP which was working. As far as the other issues, dropping 14lbs since starting is not made up, I have. None of what I described was made up. I do suffer from previous issues yes, but Forteo exasperated them to an unbelievable degree causing me to be where I am now. Again, I pay close attention to what is going on with my body due to the fact that I do suffer every day with ongoing issues so I may pay more attention than someone else....

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Correction, I wasn't throwing pvc's before starting Forteo!

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naomikrst | @naomikrst | Nov 4, 2023
In reply to @lkel "Fosamax (alendronate) holds the gains from Forteo. Per my Endo (I recently finished 2 years of..." + (show)
@lkel

Fosamax (alendronate) holds the gains from Forteo. Per my Endo (I recently finished 2 years of Forteo) and was prescribed Fosamax.

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Fosamax has a lot of side affects.... Not sure I want to try it after this and she refused to do pills anyways but thank you.

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1 reply
lkel | @lkel | Nov 4, 2023
In reply to @naomikrst "Fosamax has a lot of side affects.... Not sure I want to try it after this..." + (show)
@naomikrst

Fosamax has a lot of side affects.... Not sure I want to try it after this and she refused to do pills anyways but thank you.

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No need to thank. It's just a statistical point. Paraphrasing to my Endo, if you don't take something to hold the gains, there is no reason to do Forteo. I'm guessing some of the others (Tymlos, etc) may be the same. Something to ask your Endo about.

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1 reply
njhornung | @normahorn | Nov 5, 2023

I may be completely wrong but will raise the issue anyway. The daily diarrhea episodes may be leaving you dehydrated with an electrolyte imbalance. Also, your gut biome may be even more out of whack than it normally is with your IBD. These then may be aggravating your other conditions. Are you drinking Gator Aid, Boost, Ensure or whatever is compatible with your IBD? And maybe at least eating yogurt for the probiotics?

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